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Lucas’s Story

Lucas Thai Tran 11/07/03-10/16/07

Lucas Tran Purple Memorial Fund was set up to honor Lucas & support children's med tx.Click here to donate online.See 12/11/07 entry for Fund details.View slide shows,videos,& a photo essay under "links" (please note: there are photos of his death).Learn more about his journey under "journal".Summary of his tx is under "my story".

On Friday 8/13/04,during a 9mth wellness checkup,Lucas was diagnosed with neuroblastoma,a childhood cancer.The primary tumor was located above the adrenal gland on the rt side of Lucas' body and extended past the midline to the lft side.There were also some nodules in the liver.

Because the primary tumor was large enough to cross the midline of the body and spread to the liver,Lucas' condition was characterized as INSS Stage 4(the most advanced stage).One piece of good news was that no cancer was found outside of the primary tumor and the nodules in the liver.The 2nd piece of good news came from the biopsy result which indicated that the tumor is MYCN amplified negative.This marker is used to determine how aggressive the cancer is and thereby how aggressive the treatment must be.An unfavorableMYCN amplified result would have made Lucas a high-risk case. Since it was favorable,Lucas' condition was considered intermediate-risk.Unfortunately,another test result from the biopsy indicated unfavorable for the tumor cellploidy marker.This means that Lucas will need to undergo 8 3-week cycles of chemo instead of 4.According to the American Cancer Society,the 5-year survival rate for children with intermediate-riskneuroblastoma was 80% at the time.The 3rd marker,Shimada classification of the tumor cell,was favorable but did not affect the treatment plan because the ploidy marker was already unfavorable.

After completing 8 cycles of chemo,the primary tumor shrank significantly.Lucas then had a debulking surgery in which 90% of the shrunken primary tumor was removed.The doctors hoped that the nodules on the liver were killed by chemo because they were risky to surgically remove.The liver nodules and remaining tumor were monitored by scans every 3 months.One year after the surgery,Lucas' oncologists believed that it was safe to space the scans out every 6 months because the chance of a relapse for his risk category was so low beyond that point.Four months after this point,Lucas complained,"my tummy hurt."On Tuesday August 29, 2006,further testing showed that his tumor was back and perhaps bigger than ever.Worse yet,the cancer cells had spread to his bone marrow.

The new tumor looks to have grown out around the remaining portion of the original tumor.In the bone marrow, the portion in the right upper arm has a high concentration ofneuroblastoma cells.The bone marrow in the left upper arm also has heightened concentration but to a lesser degree.There is also a lump near Lucas' left collar bone,probably from a cancerous lymph node.With this relapse,his condition is now being treated as a high-risk case.According to the American Cancer Society,the 5 year survival rate for children with high-riskneuroblastoma is 30%.

He started the COG ANBL02P1 protocol and finished 5 cycles of chemo(consisting of Cytoxin,Doxorubicin, Cisplatin,Vincristine,Topotecan,Etoposide/VP-16) at LPCH followed by an incomplete resection at MSKCC.Then he completed the 6th cycle at LPCH followed by MIBG-I131 treatment,conditioning (Melphalan,Carboplatin,and VP-16),stem-cell transplant,and 12 days (6 days of large field,6 coned in) of radiation at UCSF.We left for NY 5/16 to start 3F8.MSKCC gave away our spot in the study so Lucas waited for an extra month to start 3F8 with glucan.At the beginning of July,his liver function tests became elevated (5-6 times normal) just before a new 3F8+glucan slot opened up for him (so he did not receive 3F8).In the meantime, he had started Accutane.Halfway through the 3rd cycle of Accutane,Lucas complained of headaches and extremity pains.September 20, 2007,he had an urgent head CT which showed metastasis to the bone between the eyes.Later that day,Lucas had his first MRI which showed more extensive disease--both optic nerves were encased with tumor.He had 12 doses of head radiation and tookTemodar (without Irinotecan due to concern that both would sensitize his head too much for radiation).

Sadly,the cancer rapidly progressed and took his life.He is dearly missed by his father-Chinh,mother-Thy,big sister-Kira,and baby brother-Aiden (that he was looking forward to meeting but only knows as a dot from the 1st ultrasound picture).

It would mean so much to us if you read through this journal and share Lucas' story.All we have is his memory now and don't want him to be forgotten.For an overview of Lucas' life,read entries starting September 20, 2007 (when we found out Lucas' cancer progressed)-present. 

Please note that cb asks for donations.This is not something we added to the website,it is a standard format that they have set up.We can not edit the statements or remove them.The donations through Caringbridge help support their efforts,it does NOT support LTPMF.

Our primary purpose for continuing this website and LTPMF is to keep Lucas' memory alive.Do not feel uncomfortable contacting us because you can not contribute to the fund.It is much more important to us that he is remembered and that his story is heard and shared.

Latest Journal Update

9th Birthday

Grief is unlike
other emotional trauma where our defense blocks it out or refocuses us away
from the most difficult memories. With grief, we don't want to forget. We want
to hold on to as many memories, happy and sad, as we can...or at least I do. I
want to hold on to my remembrance of Nookie as whole as possible because
that's all I have of him now.


Most of the
instances when I think of Nookie are poignant. I often start off remembering
something joyful and that would lead me on to other memories that fill in his
life much more fully. For example, when it's a beautiful day, I would remember
that he used to say "it's a beautiful day. I had a good time." Nookie
often said this after he had an enjoyable outing. At first, I thought he really
enjoyed being outside on a nice day. But he said this one time on an overcast
day. That's when I finally realized that he simply meant a beautiful day as an
experience and not a literal comment on the weather.


I'd like to share
with you an example of my train of remembrance. I start off remember an
instance on one night when we were walking out of the Container Store on
Santana Row in San Jose. Nookie said, "it's a beautiful night. I had a
good time." He loved to run around that spacious store and play with
bottles, containers, and other household items. Joy for Nookie was often so
simple like this, just a trip to a store. Whenever he saw scented candles in a
store, he asked me to bring down one of each scent so he can smell it. He also
loved to taste the variety of food samples at Whole Foods during the year he
was out of treatment. But after the relapse, he was constantly under treatment
again and often neutropenic so he was no longer allowed to enjoy even something
that simple. Then, I would think how special these simple trips were to him,
and how often he missed being able to taste the sample foods, and how many
times he could not even go to a public place because he was neutropenic or at
the hospital. I still cringe at all the surgeries, nauseating treatments, and
pokes he had to endure. Because we could not cure him of his fatal cancer that
also caused him so much pain during his short life, I cherish in an overblown
way the little victories. During his last relapse, his frail little body was so
beaten down that he was constantly tired and dealing with the headache and
blindness in one eye. Physically, he was a shell of the lively happy busy boy
we all knew, but we could still tell it was still our Nookie inside. I still
remember clearly one of his last visits to UCSF. When the nurse told us what
needed to be done that day, she explained that they need to get some blood from
Nookie there then he would need to have blood taken again at the clinic across
the street. After the nurse left to get things ready, I asked Nookie if he knew
what will happen. He was so tired that I wasn't sure he was even listening. He
was propping his face up with one hand while listlessly looking into space,  but he answered, "they are going to poke
me to get my blood." Not wanting him to be surprised when we go to the
clinic later, I asked if he knew what they will need to do at the clinic later.
With his voice slightly breaking, he answered, "they are going to poke me
again."  I had asked the nurse if
they can simply draw the additional blood there so Nookie wouldn't have to be
poked twice, and she arranged for that. I was so happy at this little victory
even to this day. It's surely an overblown sense of achievement because we were
not able cure his cancer or even get rid of all the pain and discomfort he was
enduring, but somehow this really stays with me. Nookie had been poked many
times at this point, but he laid there still curiously looking at the nurse
preparing the syringe and needle, wiping down his arm with an alcohol pad,
completely calm the whole time although he knew well by then what was coming.
As soon as the needle broke the skin on his frail little arm, he let out an involuntary cry of pain but kept his arm still as he knew he needed to do. Once it was done, he stopped, resigned the entire time
that he needed to endure another poke without complaint. My remembrance of
Nookie often follow this train from simple joyful memories, to the pain and
suffering he endured, to the maturity and courage he showed. I still rely on his example to inspire me in
my worst days when I miss him the most and am grasping at ways to cope. But if he
went through all that before ever turning four and not complain, I need to
follow his example.


Aiden has been
asking more and more about Nookie. He knows he has a brother name Lucas who we
call Nookie. Recently, Aiden seems less patient asking when Nookie is coming
and commenting that it's been a long time. He asked Thy if Nookie will be here
for his birthday (today). We told him that Nookie won't be here, but we'll
celebrate Nookie's birthday for him. Like Nookie, Aiden likes to climb onto my
lap when I'm at the computer. Aiden also likes me to open up an empty file for
him to type into. On February 24th, I left him to type while stepping away for
a moment. Before I stepped away, he asked me how to spell "are". I
told him. Then, he asked how to spell "here". After I told him, he
went on to complete his typing. When I came back a minute later, he showed me
what he had typed. I had to show Thy right away. Then, I saved the file. This
is what Aiden had typed:


Aiden kira thy dada are here and nookie
is not here

17 people hearted this



Mary Tamulevich
By Mary Tamulevich
^^Lucas^^ I am thinking about you today and praying for your family and friends for I know how much they miss you. MJ/
Angel Venters
By Angel Venters, Greenville, NC
Happy Heavenly Birthday, ^Lucas^. Gone, but not forgotten. I remember you so well and you will always have a special place in my heart as you were the first one I was assigned on Angel Wings to pray and send messages to when you were sick. I feel as if you and your family are a part of my family. They are still in my thoughts and prayers as you are so loved and missed. Angel hugs and love ~
Kamal Dave
By Kamal Dave
Dear Lucas, (Nookie) and Tran Family and all of your friends and community,

The autumn is here. Not that every season and every day doesn't bring oceans of memories of you, Nookie: like how you always found ways to play (arms in the air catching raindrops in New York outside MSKCC, blowing bubbles at a pool when you could not swim, sitting on your Dad's shoulders watching your sister go to school with your mask on to avoid infection, playing with gadgets and inventing your own, finding pleasure in the big cardboard box when your family's new fridge was delivered, even playing at your party post-chemo in whatever way your body allowed,) and of course your creative concoctions of food, your devices (your paper shredding company, Rocco, and that machine that kills cancer while it takes pictures) and most of all, I think of how you Love your family. Sometimes I think of you as a big purple Mr. Bubble. Mr. Bubble is a soap
product and their mascot is a big purply pink bubble man with a huge smile. I remember your food request when you were very sick: salami sandwich and a glass of milk. And even then you wanted to get up and play, and you were surprised that your legs would not cooperate. Even though you didn't meet him, your little brother was there with you that entire time. I have a belief that he felt you from inside where he was floating, waiting to be born.

I have been thinking much about your ingenuity. In my work, we hear much about "creativity", "thinking outside the box" "resourcefulness" "reapproproating" etc. These are all big words that I think just mean, being playful. I immediately think of your adventuresome palate, your ideas about connecting things that most people would not connect, and your appetite---for Life.

Chinh wrote a story about your easy going delight. He also wrote about your Love for Thy. He said that your sweet nature is exactly what the world needs. And he said that he always prided himself on loving Thy more than any man---until you came along and eclipsed even your Dad's adoration of your Mum.

Remember "show me your pretty eyes?" I do. I remember funny pictures of you taken by your Uncle whom you called Dodi. Lots of pictures of your ingenius, mischevious eyes, and your smile, and even the adorable tilt of your head, which belied the ugly fact that the medicine you needed to save your life, is also poison that stole your ability to hear, but never your ability to listen.

I believe you listened to your Life Force: play, design, Love.

September is Childhood Cancer Awareness Month, like one month is enough. I truly feel that when your Loved ones were forced to part with you, we were all dealt a huge loss. Already your creations and ingenuity and talents were speaking of a deeply innovative spirit, an enormous person inside a small body.

And so your loss is enormous for everyone.

I want you to know that every single day, I really really try to play, as you did, to shower my Loved ones with kisses as you did, and to be open and adventuresome with food and ideas and people.

You chose Dodi, a Hebrew name unbeknownst to you, for your Uncle. And you asked for salami and milk, definitely not Kosher! Oh Nookie, Lucas, Lover of vaccuums, shirts without pants, purple grape, creative loving playful genius spirit, I miss badly the things you would have made, said, done, Loved, shared. And I never ever forget the ebulient spirit you are. My thoughts are with your family and Loves as autumn approaches.
Angel Venters
By Angel Venters, Greenville, NC
^Lucas^, you are not forgotten as you hold a very special place in my heart and will forever. I miss not writing on your site and seeing posts from your Mom and Dad and others, but at this time of the year, I remember you having a birthday even if it is a heavenly one now. You were such a precious little boy and you have left footprints on my heart. With all my love to you and your family. They will forever be in my thoughts and prayers. Angel hugs ~
1 person hearted this
Jennifer Rathbone
By Jennifer Rathbone
I do the same exact thing. I think most of us do. You're not alone.
Jane Jacobs
Remembering your boy today. Thinking of you and hoping all good things for you.